Been struggling for 4 years after RAI. Not able to do much before I am shattered and feel awful. Night sweats and hot in bed if I have overdone things.
TSH 0.19 (0.55 - 4.78)
FT4 19 (10 - 25)
FT3 4.5 (4.0 - 7.0)
B12 437 (200 - 700)
FERRITIN 129.3 (10 - 350)
FOLATE 5.6 (3 - 20)
Am supplementing with igneous B12 complex following these results. Eating Brazil nuts and liver.
I want to push for T3 trial - I live in Scotland - or purchase if endo not in agreement. Any advice please.
Currently on 100mcg levo.
Endo says no antibodies so I don't know what caused me to go hyper in 2010.
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Lalatoot
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Graves is an autoimmune disease and as such its for life, it's in your blood, your DNA.
There is probably some genetic predisposition maybe a generation away from you, and it can be triggered by a sudden shock to the system, like a car crash or unexpected death.
A fully functioning working thyroid would be supporting you, on daily with basis with approximately 100 T4 + 10 T3. Some people can get by on T4 alone, some people, at some point in time, simply stop converting the T4 into T3 which is what the body runs on, and some people simply need both these vital hormones dosed and monitored independently to bring the hormones into balance and to a level of well being acceptable to the patient, which generally means both essential hormones will be in the upper quadrants of their relevant ranges.
Your ability to convert T4 into T3 is just over a 1/4 ratio. Most people feel well with a ratio somewhere between 1/3.50 - 1/4.50 - though my NHS take 1/5.50 as an acceptable level, and I was refused a trial of T3 because my TSH was suppressed.
Ferritin, folate, B12 and vitamin D all need to be at optimal levels for thyroid hormone conversion to be fully utilised, so with a quick look, folate and B12 could improve, but see your supplementing there, and I can't see a vitamin D result.
I am now self medicating having purchased and trialled both T3 and NDT. Both worked and have decided to stay with Natural Desiccated Thyroid as I find it softer on my body. It is pig's thyroid, dried and ground down into tablets, referred to as grains, and contains all the known hormones that our own thyroid produced viz: T1,T2, T3, T4 and calcitonin.
Elaine Moore went through RAI back in the late 1990's and found no help, so wrote a book: Graves Disease - A Practical Guide - to help others in the same predicament. She has now gone on to develop and run a very well respected, researched website, on all things Graves for all Graves patients and their friends and family.
Your Thyroid and How to Keep It Healthy is written by a doctor Barry Durrant - Peatfield who has himself hypothyroidism. The thyroid is a major gland responsible for full body synchronisation and is responsible for your mental, physical, emotional, psychological and spiritual well being. We may not now have this gland but we do need to know what it does so we can try to compensate for this loss.
Tired Thyroid by Barbara S Lougheed is another book written by a lady who has Graves and went through RAI. I believe she now runs a blog under the same title.
The above three books have all helped with my understanding, on where I am in all this and along with this amazing site I have managed to turn around, and get back some QOL. I'm still a work in process, but know I'm now going in the right direction.
Thanks for the support and advice. No vit D was done this time for some reason known to the surgery. The endo said I did not have autoimmune probs 4 years ago when she did antibody tests. I was too naive then to get results and to question anything. I do know that for the 5 years prior to my thyroid going haywire I was overdosing on iodine. Wonder if that was a factor.
I would certainly think this iodine supplement would have contributed to your health issues. Why did you start supplementing iodine, were your iodine levels tested beforehand and monitored during this period ?
We've all been there, naïve, trusting, not questioning, as we consider that the doctors know best. So now, turn this around, trust yourself and start learning to become your own best advocate, as many of us on here have had to do.
It's a massive learning curve, but things do start falling into place, and even simply reading others people's post and answers is enlightening. The Elaine Moore website is definitely worth dipping into, and there is an open forum, much like this one. I initially went for the book, as at that point in time, I'd only just purchased this little laptop and just learnt how to find Amazon and not even knowing of this site !!!!!
I didn't deliberately supplement iodine and I didn't have a thyroid prob back then that I was aware of. Because of 3 kids in 3 years and early menopause I was told by the doc to supplement with calcium. I did so with multivits for over 50s. Each daily dose had 100 % of daily iodine in them but I hadn't read the label.. Given that I wasn't deficient and ate well I reckon I got more than I needed. Annoyingly when I was diagnosed with hyperthyroidism and I told the docs I took a multi vitamin no one questioned what was in it and it was many many months before I twigged.
I don't know enough medically to make any sensible comment on this multivitamin you took. From what I read on here, multivitamins are not worth buying as each vitamin and mineral needs to be introduced separately, and taken, sometimes at different times of the day for maximum absorption.
We are where we are.
It's imperative you are monitored and dosed according to your T3 and T4 blood test results, and not on a TSH. Having had RAI your feedback loop is now broken and the value of a TSH, in isolation, is useless.There is room to increase your T4 up and that should in turn give you some extra T3, but ultimately you may find it necessary to try a little T3 along with T4 to replace both the hormones your thyroid produced.
Your doctor may need to refer you to an endocrinologist to sanction the T3 trial, and this probably is the first option to try, as to have some support, is of course, a better option for everybody.
Ultimately if you can't get any help and or support, you can purchase the T3 and try it for yourself, where you will have more freedom to dose to a level that is effective for you. There is of course NDT, the " grandfather " thyroid hormone replacement which was used, I believe for over some a hundred years, prior to the introduction of Levothyroxine and the blood test requirements of the 1960s.
Thanks Slow Dragon. I am in the far north! East of Inverness. I will ask the GP on Tues if they did vit D and supplement as necessary. I am on a strictly gluten free diet. The medics I have seen all have assumed that TSH around 4 and FT4 in range means you are feeling well so it is an ongoing struggle - as it is for many on here. I wanted to consider upping the dose when I had those blood tests done but the receptionist wouldn't let me. Ha Ha! The GP I saw was worse. He said that they din't test FT£ and that my thyroid was fine now as the end had implied thyroxine was working in her letter. He then started down the Lyme Disease question route. Didn't know his arse from his elbow. So I have waited 3 weeks to see a GP that does listen.
Thanks. I am hoping to sort things out up here by bloody determination. I hope if I do it will help others. But if that doesn't work I will head to Edinburgh.
To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.
The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.
All I know is I have been on 125mcg levothyroxine for 16 years, my sister is al,so on them, she would not take tablets at first.. She was not well for a year, then went on levo. apart from arthritus she is quite well. I was told once you start levothyroxine it is for life. Good job I live in England where important prescriptions are free. Mind you I am now a lot older so it is free anyway. I know only what I read, I trust my doctor, and I have never had any problems. Touch wood.
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